Knowing my limitations #lupus

Last Friday, I went to a show for the first time in a few years. I went to see Milo Greene at the Wiltern. The last show I went to was about 4 years ago, and a lot has changed with my body since then, so I didn’t know how I would handle it.

The fact that I tested negative for neuronal antibodies in my recent blood work doesn’t necessarily mean that I’m not still having residual vasculitis in my brain. It’s hard to know how long it would take any damage to heal, if it will even heal at all.

The Wiltern is a small indoor theater, probably the smallest I’ve ever visited aside from local places. It was a nice place. Surprisingly not too crowded. I thought their sound system could use a little tweaking, as it was loud and a bit distorted at times. Other than that, it was a great show. I had seats in the loge, so I didn’t have to fuck around with standing-room-only. There’s no way I could stand for a show. Milo Greene opened for another band but I was really there just to see Milo Greene. I was going to stay for both bands if my body allowed it, but it did not.

Milo Greene was on stage for about 45 minutes. Halfway through their set I could feel the migraine coming. When I’m about to get a really bad migraine, I can’t turn my head, and that was starting to happen. It’s not that I didn’t enjoy myself, because I really did, but I also was realizing that this was the first concert I’d been to since knowing about my lupus and vasculitis. The loudness of the show was definitely having an effect and I knew I couldn’t make it through another band.

I was a little disappointed that I couldn’t stay for the whole show. It was the first normal Friday-night-thing that I had done in a long, long while. At the same time, I didn’t want to remember “getting through” the concert. I wanted to remember enjoying it. Rather than making myself stay, I decided to go buy a T-shirt and go home. It was the right decision. I had gotten to see the band I wanted to see, and decided to hit the road. In a way I was proud for allowing myself to go home rather than putting pressure on myself to stay.

On the way home, my headache actually let up. It probably wouldn’t have if I stayed for the whole show.
For the next two days I had headaches. I’d actually been getting some relief from headaches with the Nortriptyline my neurologist gave me. It’s hard to know, but I wonder if the show triggered an episode of headaches. They were weird headaches. I had a lot of pain at the back of my skull on the left side. My headaches are almost always left-sided, but I had a pulsing in my neck on that side too. It was short-lived, luckily.

I felt pretty fragile before and during the show. I didn’t get too dressed up, since getting ready to go somewhere is pretty exhausting these days. If I spend too much time doing hair or whatever, I won’t have the energy to make it through the event. I wasn’t sure what to expect with my body so I spent the day actually worrying about going rather than looking forward to it. That happens a lot when I make plans. I end up breaking plans a lot of the time because I can’t handle the pressure of wishing I felt well and worrying/knowing that I won’t.

Being at the show was an interesting experience. I guess it was a test to see what I can handle these days. I know the last show I went to I stayed for the whole thing, although I’m sure I left with a headache. It was also interesting to people-watch. I went to the concert with my mom, but I probably wouldn’t have gone with anyone else. She’s the only one that understands my limitations. She probably understands them better than I do. With her presence I was able to comfortably make the decision to go home early. It’s not easy to do that around other people. It’s hard to get people in my age group to understand how hard certain things are for me. Some people my age seem to have a strong need to be overstimulated and I just can’t keep up with the booze, and the loud music, and standing in the pit for 3 hours. I’ve felt bad that I have a hard time with my social life, especially since being sick, but I realized I don’t want to be around people that can’t just chill the fuck out sometimes. In a way it made me feel relieved. It made me feel like I’ve been making good decisions on not being around people that I feel forced to ‘keep up with’. Once you’re in a situation where you’re surrounded by people who are in search of that Friday-night overstimulation, you feel social pressure to force yourself to “have a good time” too. If I push myself too far, if I stay out too late, if I don’t listen to my instinct that “this is too much on my lupus” I will definitely pay for it. People probably think I’m flaky, but it really just comes down to how much pain I’m dealing with, and that there really is never a ‘right time’ for anything.

From the show I took away a good memory, a 2-day headache, a cool t-shirt, and a little reassurance. It was worth it.



  1. Glad you were able to go and enjoy part of the show! I have missed three concerts in the last couple of years because I didn’t feel good. (Keb “mo, B.B. King and John Hiatt) and so many of my son’s stuff at school. I try when I think I can, and my Hubby understand my limits, as your Mom does. AND you got a t-shirt!

  2. I completely understand what you are experiencing. When I was diagnosed with lupus, I was 21 years old. It was really hard for me to “keep up with” friends. I had been in and out hospital repeatedly for three years. I spent one third of a year in hospital. I broke plans all the time. Once I recognized my own limitations, things got easier. My lupus has been in remission since I learned to do things at my own pace. I work five days a week, I rarely break plans, I spare time to dress up… I never imagined this kind of future would come to me. You made the right decision at the concert. It’s nice to have someone who understands your limitations. Don’t push yourself too much. (^-^*)

    • Thanks Tommie 🙂 I was 21 when I was diagnosed, too. I’m glad to hear that you were able to help put your lupus in remission by doing things at your own pace. I hope that if I take care of myself, I can eventually be in remission too. I won’t push myself too much ^_^

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